Dedee Posted February 23, 2011 Report Share Posted February 23, 2011 You guys probably remember that I have a dd who is 7 that had a severe PANDAS flare in November and has only gotten worse since that time. We have had Bicillin injections twice with no real improvement. She had IV steriods last week and we are starting to see gradual improvement. We are definitely looking in the direction of IVIG. We had made an appointment to see Dr. Murphy in March but I am second guessing because I heard she only does antibiotics. We saw her several years ago with my son who is PANDAS but he only required antibiotics and we didn't look any further. This time around, I KNOW we need IVIG. I really loved Dr. Murphy but don't want to make a wasted trip (15 hrs from home) if we aren't going to see this the same way. So I have been considering Dr. K. He is much closer to where I live and I have heard good things about his experience with IVIG. I'm not sure how much if any my insurance would pay. Does he file insurance? I was thinking about the phone consult, but didn't want to put the money into it if I wasn't planning on following through with him. For those of you who have seen him or had any experience with him, I would love your input or opinions. Thanks so much. Dedee Link to comment Share on other sites More sharing options...
airial95 Posted February 23, 2011 Report Share Posted February 23, 2011 I don't know about Dr. K, but my son is currently a patient of Murphy's. At our appointment in December they mentioned the possibility of IVIG. I don't know if her opinions have changed or not on that subject...but they did bring it up to us - we're just not there yet. Link to comment Share on other sites More sharing options...
butterflymom Posted February 23, 2011 Report Share Posted February 23, 2011 (edited) = Edited October 5, 2015 by tampicc Link to comment Share on other sites More sharing options...
lss Posted February 23, 2011 Report Share Posted February 23, 2011 You guys probably remember that I have a dd who is 7 that had a severe PANDAS flare in November and has only gotten worse since that time. We have had Bicillin injections twice with no real improvement. She had IV steriods last week and we are starting to see gradual improvement. We are definitely looking in the direction of IVIG. We had made an appointment to see Dr. Murphy in March but I am second guessing because I heard she only does antibiotics. We saw her several years ago with my son who is PANDAS but he only required antibiotics and we didn't look any further. This time around, I KNOW we need IVIG. I really loved Dr. Murphy but don't want to make a wasted trip (15 hrs from home) if we aren't going to see this the same way. So I have been considering Dr. K. He is much closer to where I live and I have heard good things about his experience with IVIG. I'm not sure how much if any my insurance would pay. Does he file insurance? I was thinking about the phone consult, but didn't want to put the money into it if I wasn't planning on following through with him. For those of you who have seen him or had any experience with him, I would love your input or opinions. Thanks so much. Dedee Dedee, I have sent you a pm. Linda Link to comment Share on other sites More sharing options...
pixiesmommy Posted February 24, 2011 Report Share Posted February 24, 2011 We used Dr K a little over a year ago. I'm open to answering any questions about him you have We were in total crisis and he got us in quickly for a steroid burst and then worked us in the next week for IVIG after her steroid burst was conclusive for PANDAS. Link to comment Share on other sites More sharing options...
SarahJane Posted February 24, 2011 Report Share Posted February 24, 2011 My ds(7) is Dr K's patient. We did IVIg 3 months ago. We're still recovering but we ARE recovering. I would recommend him. I agree with tampicc's info. Took a week to get our call (& that's because I had to send records). Then when we said yes to IVIg (we were already seeing abx not work), we could have had it in 2 weeks...we chose 4 weeks to give more time for insurance. It was covered for us. We did steroids but only to try to get some relief from symptoms...didn't need them for dx since dr was 95-100% sure it was PANDAS. PM me if you want to know more. Link to comment Share on other sites More sharing options...
norcalmom Posted February 24, 2011 Report Share Posted February 24, 2011 love him. went to him for same reason. we are in california. he's probably seen more pandas patients than all the other pandas docs put together, since he's be providing pandas care for over a decade. he's does ivig, but is fairly conservative with it -only one does of 1.5 usually...which I like. He believes that that will take care of at least 80-85% of kids, and the rest might need another does if they relapse. You should try to do as much bloodwork and infection investigation as you can through local doctors, as well as antibiotic treatments. he does not recommend long term high does antibitotics (but many of us have found we still need that after ivig - and get from local docs). you should email him. he will email you back. send him a page or so on you situation. Link to comment Share on other sites More sharing options...
Wilma Jenks Posted February 27, 2011 Report Share Posted February 27, 2011 We used Dr K a little over a year ago. I'm open to answering any questions about him you have We were in total crisis and he got us in quickly for a steroid burst and then worked us in the next week for IVIG after her steroid burst was conclusive for PANDAS. Link to comment Share on other sites More sharing options...
Doug Posted February 27, 2011 Report Share Posted February 27, 2011 We have had IVIG twice with Dr.k and we have loved him both times He is so good with my dd. Tracie Link to comment Share on other sites More sharing options...
Telya Posted February 27, 2011 Report Share Posted February 27, 2011 We have our first appt Monday with dr. K. What should we expect. Heresppnded to my email within 12 hrs. And we got into his office in less than a week. I'm very opptimistic. Link to comment Share on other sites More sharing options...
Doug Posted February 28, 2011 Report Share Posted February 28, 2011 We have our first appt Monday with dr. K. What should we expect. Heresppnded to my email within 12 hrs. And we got into his office in less than a week. I'm very opptimistic. He knows his stuff!! he will tell you all the things you will need to do Tracie Link to comment Share on other sites More sharing options...
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